Monthly Archives: June 2014

I would like you to introduce you to my friend Julie. Other than Julie being addicted to scrap-booking and crafts I never notice anything different about her. Julie has the best personality.One of those people you think must be faking it because she is always happy. She has a gorgeous smile, a quick laugh and an awesome sense of humor. On top of it all she is beautiful. The kind of beauty that radiates from the inside out. This is why I was beyond surprised at her challenge.

My challenge: Self Esteem

I was born with Dwayne’s Syndrome. Dwayne’s Syndrome is a dead nerve in my right eye which has paralyzed one of the muscles responsible for movement. I have perfect 20/20 vision in both eyes, but I don’t have binocular vision as my right eye has a 5 degree from center inward position.

As a child, I used to be called the cross eye trash can. Kids wouldn’t let me sit with them on the bus. My self-confidence was attacked. But I learned to forgive those kids for what they did to me because I know they were hurting somehow.

I continue to hear the voices of that childhood bully. I don’t see the beauty that others see. My hubby, kiddos and friends tell me all the time how beautiful I am. WHY can’t I see me through his and my kids eyes? !!! It makes me so sad….:(

With that being said don’t feel sorry for me. I don’t. I have a wonderful husband, family and friends. The bullying of the past makes me appreciate their love for me. I do sometimes wish things could have been different, but then again, maybe I wouldn’t have become the kind, accepting and open-minded person I am today.

I pray for a day when children are no longer bullied because they are different.

****************

Go back for a moment and look at Julie’s picture. Is her eye the first thing you see? Me, not so much. I see such a happy, beautiful lady. I can hear her laughter. I know Julie, personally. She is quite incredible. Well, once you get past the craft obsession. By the way, Julie…Abby still wants a craft-date.

To learn more about Julie’s craftiness visit her blog The Cape Cod Scrapper. She will give you great ideas, even if you are as untalented as I am. She is even willing to tutor.

Dwayne’s Syndrome is a rare form of strabismus, or misalignment of the eye. Where most forms of strabismus leave side-to-side eye movements intact, in Duane syndrome the “wiring” of the eye muscles gets jumbled, and movement of eye(s) is limited in certain directions. To learn more about Dwayne’s syndrome please visit The Boston Children’s Hospital information.

Share this:

Like this:

This is kind of a Jen Kehl type of post but I hope everyone bears with me. I listen to Pandora at work. This means music goes from Eminem to the Drop Kick Murphys to the Glee Soundtrack. The other day right after I heard a song by Eminem the music transitioned to Christina Perry’s A Thousand Years (theme from Twilight). It was the instrumental version so I did not have the singer’s voice, just the one in my head. It occurred to me that the song while about true love, to me is about parenthood.

“The day we met, Frozen I held my breath. Right from the start I knew I had found a place for my heart…”

With each girl I literally held my breath when I first held them. I was so afraid I would break them. But I knew in that instant I had found my home. One where I would always be warm and loved.

“Time stands still. Beauty in all she (he) is…I will not let anything take away what’s standing in front of me…”

Time does stand still. It also goes faster than a heartbeat. But there are moments of parenthood where you are lucky to see for the rest of your life. Their first step, their first smile (for real, not the gassy one). The day they drive the car for the first time. The moment they find their true love. No matter how many times you hear “MOOOOMMMMM” and wish they had a mute button. It will erase the moment you heard them say momma the first time.

“And all along I believed I would find you. Time has brought your heart to me. I have loved you a thousand years. I will love you a thousand more”

Children don’t understand. I know I did not understand the depths of my parent’s love until I had my own. Time might march on. We are only “here” for a short time. But love transcends time. It transcends distance. You can have a child half-way around the world and yet your love reaches them. Your child might be non-verbal. They might be in the midst of an epileptic seizure. They might just be being a pain in the butt teenager. Yet they feel your love.For a thousand years you get to feel theirs right back at you.And that is how deep I got into A Thousand Years until Men in Hats came on. So everyone grab your child and do the Safety Dance!

(Originally posted on 30-JUL-2012)Right now I am reading a great book with an odd title. It is called, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kidswith Disabilities by Yantra Bertelli, Jennifer Silverman and Sarah Talbot . It is a collection of memories by moms and dads who have done it. Lived the life as a parent of a special needs child.

In the book there is an offering called Glass Houses by Sarah Talbot. She tells of how instead of institutionalizing her son, they basically turned their home into an institution. The State they live in actually agreed that it was less expensive AND more healthy to raise their son at home and bring the services (including aides) to him. However Caleb is not their only child. So by turning their home into the institution they also (for lack of a better word) institutionalized the entire family.

Not only did the parents lose any hope of privacy, so did the other children.

It made me think back to when Boo had Early Intervention coming to the home 3-4 times a week. And how (especially in the beginning) I would “company clean” the house the hour before they arrived. You know what I mean, when you know your MIL is coming to visit so you make sure if she “unexpectedly” opens a closet nothing will fall on her head. You know the stuff that is generally on the floor/counter space? I can even recall telling my husband once not to use the bathroom! And forget the semi-annual evaluations when we not only had our regular EI Specialist but 3-4 more people coming to (in my mind) inspect us while they evaluated Boo.

The day after Boo’s last EI appointment was the last time my kitchen counter was spotless.

But reading Glass Houses brought the memories back and made me think of how under the spotlight we are. Even though EI is over (thank goodness!), we are still under the “view” of the various therapists, teachers and aides. I am sure parents of ‘normal’ children probably have moments of second-guessing themselves. However I bet it doesn’t happen everyday at therapy or when you talk to your child’s aide and realize that you forgot to give the child a bath that morning because you had both been up all night. Let’s face it, sometimes Boo is lucky to have on matching socks!

When we got drafted (since I know I signed up for the child who slept at night, not the one who wouldn’t for going on 4 years) into this life we never expected that on top of everything else we would be opening our lives to constant surveillance.

We have to worry that Boo will bite someone other than herself. We have to worry that when she goes to school, the doctor or a million therapy appointments they will not believe the bump on her head came from herself and not us. We worry about going to the ER that they will think we are a hypochondriac or worse. We worry about that woman in the parking lot who doesn’t understand that we are not hurting our child as we force them into the car seat.

When Boo was in the NICU I worried A LOT. Over the years I have worried more. But back in the NICU I never imagined that when Boo entered our life we would be opening our lives (and Allies) to life on display.

Like this:

Today is the official end of the school year for the girls. Seriously I don’t know why they even had to go today. I mean really, a Tuesday and it’s a half-day. If the school God’s loved us school would be year-round.Apparently the kids bribe better than the adults. Because here is what I get to look forward to for the next 70 days. That is SEVENTY days and nights of70 days I will hear: why can’t I get a pool?70 nights I will hear: can I have a sleep over?70 days I will hear: I’m bored (at the 71st time I reserve the right to go into the bedroom with a Hefty bag to get rid of all the toys that are boring)70 nights I will hear: but it’s too light out to go to bed70 days I will hear: why do you have to go to work70 nights I will hear: please just one more ice cream70 days I will hear: I don’t like sunscreen70 nights I will hear: My burn hurts70 days I will hear: the ocean cleans me70 nights I will hear: can I take a longer bathAnd on the 71st day they will hear me exclaim: TIME FOR SCHOOL!!!

How do you plan on spending your summer vacation?

Share this:

Like this:

Today’s challenge comes from a fellow warrior mom: Laura. Her son is gorgeous. Like a mini-Elvis gorgeous. You know before he got old. Laura is an incredible photographer, gorgeous inside and out. Her smile lights up a room. Like many of us, she has a challenge that I am so thankful she is willing to share.

My Challenge : Undiagnosed Postpartum depression.

My challenge is a common one. One that crops up among new momseverywhere. But many of us who experience it are completely unprepared. Sure,we all read the books. We spend months agonizing over what colors we shouldpaint our nurseries. Should we nurse or bottle-feed? What kind of diapersshould be buy? Moby wrap or Ergo Carrier? There’s a thousand decisions to makeconcerning BABY when getting ready to have a child. But a little known thinghappens to us once that baby comes out.. Our hormones go haywire. Andsometimes, they stay that way. It’s shocking and unexpected. I say it’sunexpected because “THEY” don’t warn us. “THEY” meaning the baby experts. Thereis a 500+ page book on all of our bookshelves talking about every detail toexpect when you’re expecting - but the chapter on the postpartum baby bluesisn’t given any real fanfare. And, well, maybe it should.

Like most moms in their last trimester, I was anxious for my babyto come early. I really wanted to deliver somewhere around the 38 week mark.That didn’t happen. 41 weeks and then some, I was induced. 24 hours later, wewere talking c-section. So, right from the start nothing was going as planned.I was fine with that knowing soon I’d have my little boy in my arms. I criedthe next 4 days in the hospital. The nurses assured me it was normal to be alittle ‘weepy’. But I was totally confused.. This was such a joyous event and Iwas full of anxiety and was on the verge of a meltdown anytime someone newwalked into my room.. I stuffed it down - not wanting to appear weak. I gotthis. I can handle motherhood. Whatever this emotional shit is, it’s gonna haveto take a hike.

We went home.. The crying continued. I looked at my husbandsleeping soundly next to me as I had a 6 day old infant attached to me. Iquietly thought to myself, “What if I just returned him to those nurses... Theyknow so much more about how to handle this.. We are completely unprepared” andI cried some more.

I went to my follow up OB appointment. She asked me how I wasfeeling. It was the first time anyone asked me that.. I choked back the hardlump of tears that was still so readily available and said, “I’m ok. I cry alittle. But I’m ok”.. It was a lie. I was a mess. But I was terrified. Thecrazy hormones in me made me believe if I showed her I was weak, she would takethis baby away from me. And I wasn’t very much in love with motherhood yet, butI didn’t want to be fired from it just yet.

The days turned into a blur. I started to walk outside. I found myway to a nursing support group and that helped a ton. But every night theanxiety would return. Was this really for us? Did we make the right decision?Yes, of course we did. But I would obsess over whether I could do a good-enoughjob. All these other mothers around me all seemed to have it soo together. Itjust seemed an insurmountable task to be a good mother..

Somehow - we made it through the first year. And then another. Icasually accepted my emotional status as just ‘a mom in love with her kid’. Itwasn’t that. I had postpartum depression. Big time. I never was formallydiagnosed because I never admitted it to anyone but myself.

Being in a baby group has it’s advantages in that you can watchyour child’s development alongside other children their age. For us, this wasanother trigger for my depression.. My son was no where near where these otherchildren were in every area of development. It was no surprise when he wasdiagnosed with autism at age 2.5 . But those waves of anxiety were floodingback. Except this time, my son was really relying on me to keep it together sowe both could get the help we needed.

In my frenzy of setting up a list of therapy appointments for him,I found myself a therapist whom I still see today. And a girlfriend introducedme to the world of essential oils (which I originally passed off as hippiejuice for a while - but I’ve since turned the corner and am now addicted). Ican self-manage the anxiety when it hits hard. My down-swing periods are notnearly as frequent and I recognize them when they’re coming.

Postpartumdepression is a very real thing. It’s not a fun part of preparing for a baby,so, nobody really gives it a good discussion. But it’s worth reading thatchapter in the book. And to be honest with your doctors about how you feelafterward. I may not have been prepared for what came following my son’s birth,but I know now that I can overcome some serious stuff.

And that’s a beautiful realization.

******************************

Isn't she wicked awesome? For those not from New England there is no higher compliment. I am so happy to know Laura and to have her be open and honest about her challenge. Approximately 15% of women suffer from postpartum depression. That is ONE in every SEVEN women. With that statistic you probably know at least one fellow mom who need your help. I am very grateful Laura found her village.

I am proud to call her friend, thank you Laura.

For more information about postpartum depression see your doctor as soon as possible. Help is available, even answers if you feel concerned about yourself or your child. There is also an enormous amount of information available online. It is most important to remember: you are not alone, you have done nothing wrong and you should never feel ashamed. Please visit Postpartum Progress for more resources.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

Like this:

While I have so much to be thankful for this week, I am only going to focus on one person who made a difference in Boo’s life.Each and every person who works with Boo becomes a part of our family. I am not sure if it happens with other parents, I hope so. Because you are all so important to a child’s success. This is a special thank you to Emily (or Emmy as Boo calls you) who had to say goodbye this week. She is leaving us for a great new adventure and we wish her nothing but happiness. Emily you will be missed. You have been an integral part of our “family”. Boo’s gains is due to your being a part of her team. Your patience. Your kindness. Your firmness. And yes, your snuggles. Boo (and we) love you “Emmy”. We will never forget what you have done for us. We consider Boo lucky to be part of a team of teachers and therapists who work together to make her the best. I know your co-therapists will miss you as much as I will. Workshops won’t be the same. Heck, Fridays won’t be the same. You have helped us navigate feeding issues, potty training, stairs and Boo finding her voice. She has flourished under your care. I have seen you correct her with love. I have seen you stop when she wants just one more hug. You held me up after that field trip of tears. I have witnessed your patience (more than I could ever hope to have). I have been lucky to have you collaborate with others who work with Boo. You have allayed my fears and offered guidance. You do every task with attention and caring. Thank you from the bottom of our souls for giving Boo your best.

Like this:

Yesterday was preschool graduation. For the third year in a row I did not attend. As I was leaving another mom said, oh are you too upset to stay? Truthfully, no. Cause it’s year three and she will be going back today. She will take a one week break and be back the first of July. Boo does not get summer vacation (thank goodness) and she will not be moving on to Kindergarten in the fall. It is not meant to sound harsh or like I am upset. I am not sad at all that she is not graduating with her peers. I am overjoyed. Heck I am thankful that we are not facing Kindergarten next year.I’m doing the happy dance.You see, Boo has the best and I mean best ever pre-K teacher. One that loves and cares for Boo in a way that makes my heart ten sizes to large. Miss Trisha is the reason Boo was enrolled into the special education program. She is the reason Boo has made such significant gains. Miss Trisha is the reason Boo was included in the best ever ABA program headed by a team of professionals that but the child before anything else.I am consistently amazed at Boo’s willpower and progress. Three years ago when she entered the pre-K classroom she had (maybe) 10 words and 20 signs. Now she shouts MISS TISHA OME ERE. When Boo was screened for the pre-K program she was using a pediatric walker.

Today she jumped around in a circle with her friends. Yes, she danced while they walked around in formation. But she was present. She was in the moment. She was having fun. This is the year Boo made friends. For real. Friends that invite her to birthday parties. Friends that do not let her sit on the sidelines and just observe. Friends that taught her how to play tag. Friends that on a field trip at the Zoo make sure she keeps up.

Not only did she help Boo up she celebrated afterwards

This marks the first field trip I attended with Boo that I did not cry afterwards. Afterwards her teacher asked if I was okay. Because to Miss Trisha all of us are her responsibility. This year Boo made friends. As in more than one. Ones that will keep in touch and be a part of her life for a long time to come. Girls and boys who play with her not along side of her. Children who run to hug her in the morning and interpret her language when there is a new child or substitute therapist. But for the first time the pre-K non-graduation makes me wonder not worry about what September will bring. How many more milestones and leaps she will make developmentally under the love of Miss Trisha? It is breathtaking to imagine.No I did not attend Boo’s pre-K graduation. Because it hasn’t happened yet. I will be there in the front row when it does. But I plan on that not happening until Miss Trisha retires. Somewhere around Boo’s 18th birthday.

I love that line in “It’s a Wonderful Life” when the old man says to George and Mary, “Aw, youth is wasted on the wrong people”.

I think the same can be said about summer vacation. Abby is ‘BORED’ and you know it is bad when she is not only bored, but bored in capital letters! And for the life of me I cannot think of why! She has played in the pool—granted the kiddie pool because we cannot trust Boo or crazy puppy with the “big” 4ft pool, gone to the playground with Daddy while Boo is in school, gone to the marina and the fish hatchery, played with her Barbie(s) and the list goes on. And let’s not forget the week she was a freeloader at our friend’s beach house—while I was at work!

I offered to give her a list of things to do. But she wasn’t too impressed with my ideas:

Clean her room

Laundry

Sweep up the dust-bunnies created by crazy puppy

Clean Boo’s room

Cook dinner

Wash the windows

Clean my room (hey, why not?)

Clean the bathroom (okay, NO ONE wants to do that!)

If I had summer vacation, I would be ecstatic to be BORED. I would read, yes read, a book that had no meaning at all. I would go for walks on the beach. I would…I don’t know what I would do because it has been about 25 years since my last summer vacation!

But I bet there would be a nice glass of pinot grigio

Share this:

Like this:

It happens, a lot. A child will see a person/child different from them and in the loudest outdoor voice possible they will ask:“Why is that person black”“Why are those two girls kissing” “Where are his legs”“What is that thing in that boy’s throat”As parents we think we are doing the right thing by saying “don’t look” or distracting the child. But it’s wrong. When you redirect the child, when you do not answer their questions instead of teaching empathy you are teaching them that there is something wrong with the other person.You are teaching them that person is not to be looked at, to be approached and most hurtful to be friends with.A child will befriend anyone. Heck, Abby will befriend a squirrel if they make eye contact. Before Boo I might have been that parent who tried to redirect her attention. My actions could be justified, I might have been hoping to spare the other mother embarrassment.But why should she be embarrassed by her child? Is she not supposed to leave home with her child who happens to be in a wheelchair? Is her child to be locked away like he is something to be ashamed? Should the father of a child who is deaf not use ASL because another person might stare? I thought we moved so far from the time when children were put in sanitariums. Instead parents are made to feel they should not go grocery shopping or to dinner with their child not to spare themselves but to spare others. We begin making our home their institution.I hope you remember my friend Julia from the What’s Your Challenge Series. This past weekend her mom took her grocery shopping. Julia loves being out in the car. She and her mom endured stares while shopping. As Lisa said, “you get used to it”. It was such a beautiful day they decided to stop at Starbucks. A young girl approached Julia, Julia lit up. Her mom, Lisa said hello to the little girl. Then sadly the girl’s caregiver rushed over. Took the girl by the arm and told her to “not to look” at Julia.Like Julia is a freak and should not be looked upon. That is how I am sure her mom felt. I know it is how I would have felt. Instead of enjoying her coffee in the beautiful day, she took her daughter to the car and cried the whole way home.In the interest of fairness I want to give the caregiver the benefit of the doubt. Even professionals that work with people who have special needs wonder if they can do it, can they take on this care. I am sure this woman thought she was sparing Lisa and Julia hurt by any questions the younger girl might ask. She might not understand that Julia understood a potential friend was whisked away. That her mom was made to feel unworthy. That her sister, had she been there, would have asked why the caregiver was so rude.There is the rub. So many of the uninitiated don’t know what to do. Do you let your child approach and ask questions?Here is the answer: YES! A resounding YES!Because here is what makes children awesome: the question they ask might not be the one you would. But they open the door for you to approach the parent. We are approached all the time with Boo. Abby tends to take the questions from the kids. I am consistently amazed at how few questions are asked before acceptance is born. (My favorite answer of Abby’s: Her brain just works differently than yours).Kids just want to ask the questions. It’s the parents who want the details. That is okay too. Ask away. Do it with respect but ask. If you are not comfortable asking, how about just saying hello?You will be teaching your child an important lesson. That we are not all the same but it is our differences that make our community. You can teach your child what empathy and acceptance means without ever having to say a word. Or you can teach them the opposite, it’s your choice.Your actions will show that Julia is not a freak. She is not something to be locked in her parent’s home. Julia is the miracle of her parents. She is the younger sister of K who adores her. She is her daddy’s princess, her mom’s warrior. She adores her two German Shepherds. She loves swimming, horseback riding and driving in the car. Julia has inspired a runner in the I RUN 4 organization. She is the reason why her runner gets up and runs every morning.

You should get to know her and others like her if given the chance. It just might inspire you to teach your child acceptance rather than avoidance. You just must learn something more about yourself.

Like this:

Today’s challenge is brought to you by the letter Y. Okay not really. This is my challenge.

I suffer from something that is not medical. It is not really treatable. But it is real. I battle self-worth just about every day. This is not a poor me, everyone pat me on the back type of post. Rather it is my challenge: Wondering if I am good enough:Am I a good enough wife? (Depends on the day)Am I a good enough mom?My hair, why just once can I not look put together?I talk too fast, too often and without a filter. (Why, oh, why did I ask my friend who is a lesbian who gave birth to their child?)I forget to breathe and enjoy the moment.I want a cleaner house. One that is put together, that looks like something out of House Beautiful. Well not stuffy. But beach life.I want to run faster, be healthier, be better. (It is not longer about coming in before last place).Why do I have to look like the kid from MASK in pictures?Is my writing good enough? Am I making a difference?I wish I was a good of a friend to others as they are to me.I wish I wore make up. Okay not really, who the hell has time for that? But I have an event next weekend and just know I am going to feel like an ugly duckling in Marcie’s beautiful dress she is loaning me.I wonder why … insert self-effacing /self-defeating comment here.For example, my challenge picture? I agonized over it. Seriously. Here I am asking people to send me their challenges and I cannot figure out how to take a good selfie. So I doctored one. Cause I’m an idiot (that is the dialogue in my head).What is crazy is that I know I am not alone in this challenge. I know so many other people must have to overcome it. Otherwise we wouldn’t leave the bathroom in the morning. About three years ago I made a conscious decision to get out of my own way. To become more vocal, less of a wall flower.I am getting better. I blog. I joined the PTA. I host ladies night. I will walk into a room where I know not a soul and strike up a conversation. If I see someone sitting alone I will try to bring them into a group. I will put myself out there in the hope to gain just a little more self-worth.I try not to create this self dialogue in Abby. That is where my journey started. When Abby began saying she wasn’t good enough. I realized I was modeling language and behavior. And that is why my challenge will not stop me. Impact me, for sure. But stop? Nope my challenge will not define me.I hope.

Follow Blog via Email

Search

Voice of the Year 2015

Copyright information

(c) Kerri Ames and Undiagnosedbutokay.com (2011 through current date). Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Kerri Ames and/or Undiagnosed but Okay with appropriate and specific direction to the original content.